‘Who I am Matters’: CQC report finds inconsistent, poorly adapted care is putting neurodiverse patients’ safety at risk
9 Min Read
Two separate reports have found that the safety of people with learning disabilities in England is being put at risk when they are admitted to hospital.
A recentwatchdog reportby the Health Services Safety Investigations Body (HSSIB) said there were “persistent and widespread” risks.
Back in November 2022, the Care Quality Commission (CQC) published a report titled ‘Who I am Matters – a report into the experiences of being in hospital for people with a learning disability and autistic people’.
The CQC regulates health and adult social care services in England. They inspect and report on hospitals, GPs and other services to help maintain good quality care.
The CQC’s report looked into the challenges that neurodiverse people face in the healthcare system. It found that many staff lacked the skills to care for neurodiverse patients. While there were “pockets of excellent work” in the hospitals the CQC visited, there was no consistency in the care and treatment of people with autism or a learning disability.
Hospital staff’s unconscious biases and prejudice have been influencing the care of these patients. For example, staff might assume that people cannot make their own decisions, or do not know what is best for them. Without proper training on how to recognise the impact of their own assumptions about patients’ needs and abilities, there is a high risk of treatment being inappropriate. This can easily lead to catastrophic injuries for people in the neurodiverse community.
To ensure that care is adapted to individuals’ needs, healthcare providers must make ‘reasonable adjustments’ for their patients. This means having the right tools available to make treatment accessible for everyone. These tools might include pictures or special software to aid communication. This is a legal duty. However, this is not always the case in practice.
A year later from this report being published we are sadly still seeing cases where people with learning disabilities or autism are being failed by the system. In this piece we are exploring a few lessons learnt from claims hoping that we can help to reduce preventable harm.
What are hospitals doing wrong?
Problems in the communication between staff and patients come up a lot. There have been many cases where these issues are clearly not caused by a lack of want to be understood by the medical staff but a lack of time, training and a need to move on to the next waiting patient. In these cases medical staff often spoke too fast, did not give patients time to absorb what was said, or did not know how to interact with them at all. This stopped patients from feeling involved and listened to. It made it difficult to understand what to expect from treatment, why samples were being taken, or why certain medication was offered. This made for a confusing, negative experience. It is important to make sure a patient understands the treatment offered to them and a legal requirement so get their consent for it. How can someone consent to something not properly explained to them in a way they can understand?
Hospital staff have also been found misinterpreting the behaviour of people with autism or a learning disability. For example, the usual methods for rating pain levels can be unreliable for these patients and could cause their pain to be underestimated. As well as this, in some cases staff did not know that what they could have thought was patient’s challenging behaviour, like shouting or fidgeting, was just the patient trying to express their needs. Barriers like these stop patients from receiving the care they need when they need it.
In emergencies, the report found that doctors are not always reading patients’ personal care plans. These contain vital information about how care should be tailored to patients’ needs. This is important for neurodiverse patients. For patients with autism and epilepsy, certain drugs can react badly with them and be life threatening. Carers and families told the CQC about having to argue with medical staff during an emergency to stop them giving dangerous medication because they had not read care plans. Where doctors have gone against plans to avoid medication thinking they are acting in a patient’s best interests, the consequences can be devastating.
Below we have selected some stories we feel need to be shared to help make sure that what was experienced by the people that lived them is never repeated again.
Oliver McGowan was a teenage boy from Bristol. He was known to have epilepsy, a mild learning disability and autism. In 2015, Oliver started having more seizures. These could make him feel confused and scared.
Oliver was given a higher dose of medication to help manage his anxiety. After this, Oliver had even more seizures, which made his mood worse. Oliver was then prescribed anti-psychotic drugs. His family strongly felt that Oliver was not psychotic, and that doctors were misunderstanding Oliver’s normal autistic behaviours.
Over the following year, despite Oliver’s behaviours just being a result of his autism combined with a busy, unpleasant environment in hospital, Oliver kept being given anti-psychotic drugs. He could not tolerate this. Oliver himself told hospital staff that he did not want the drugs, but they were still given.
Oliver suffered serious brain damage as a side effect of the anti-psychotic drugs. The decision to turn off Oliver’s life support was made one week later and on 11 November 2016, Oliver died.
Since then, Oliver’s family have campaigned for better training of staff. They believe Oliver’s death was preventable and want to stop the same happening to anyone else with autism in future. Oliver’s family worked with the CQC in producing the ‘Who I am Matters’ report we are referencing in this article.
Sadly, stories like Oliver’s are all too common. Enable Law is experienced in handling claims for people with learning disabilities and autism who have been harmed by care that was not right for them.
Molly was a woman in her 20s, who was born with learning difficulties. She also had a latex allergy.
In 2019, Molly needed surgery on her spine. Molly’s latex allergy was severe and had caused complications in surgery before. This was recorded in her medical notes. However, when Molly was in theatre just about to have surgery, a doctor that she had not met before asked her whether she had any allergies. Molly did not have any support in answering the doctor’s question and was nervous because she was moments away from having surgery. Because of this, Molly denied having any allergies.
Soon after the procedure started, Molly had an allergic reaction to the latex materials being used. This caused her to vomit. Some of the vomit reached her lungs. This stopped her from getting any oxygen and Molly’s surgery had to be abandoned. She was then taken to the intensive care unit. During this time, Molly was very unwell and suffered brain damage.
Sadly, this was not the only incidence of poor care for Molly. Throughout her hospital stay, Molly’s family had to stay with her whenever they could, because ward staff did not have the time or skills to properly communicate with her. Normal tasks like taking medication, turning in bed and showering would have been near impossible without family there to support Molly, who was left critically ill, distressed and confused.
This period in hospital was life changing for Molly. Her failed spinal surgery meant that she lost the ability to stand up or walk. Her brain injury affected her memory and worsened some of the effects of her learning disability. Her complex, additional needs after this ordeal stopped her from accessing her previous hobbies which she loved. She became more reliant on her family than ever before, losing her independence.
Molly came to Enable Law for help putting her life back together. Although her new injuries were permanent, there were many ways in which Molly could improve and maximise her quality of life going forward.
Enable Law’s team of expert lawyers successfully obtained an admission from the hospital that Molly’s treatment had been negligent. This allowed Molly to get an interim payment of compensation.
With this money, Molly has been able to fund an intensive rehabilitation course and boost her recovery. She can now access day centres where she can socialise and learn new skills. The compensation received has enabled Molly to adapt her home to her limited mobility, so that it is as easy as possible for her to get around. Finally, Molly’s claim has funded a private carer. This has been huge for Molly’s family, as they no longer have to constantly help her with things like personal hygiene and moving around. Without this pressure to be Molly’s carers, her family have been able to step back into their normal family roles, while Molly has regained some of her personal freedom.
It is clear from the CQC’s report and these stories that neurodiverse people are still not getting the adjusted care they have a right to expect. They are not always being treated fairly, with dignity and respect. When this has negligent consequences, patients and their families should not be left to deal with the aftermath alone.
If you, a loved one or someone you care for has been injured by healthcare not properly adjusting to their needs, please give us a call for free on 0800 044 8488 or fill in our form here Contact Us – Enable Law to let us know what is the best way for us to contact you. . Our specialists can offer a free, no obligation call to go through what the options are and discuss a potential claim. We are in the process of updating all our client facing materials and communications to make sure all of our clients can understand them. If you prefer other methods of communicating with us we will always adjust to your needs to make sure you are being heard.
*names and some facts have been changed to protect client anonymity – this story is an illustration of the kind of cases Enable Law help with.